Spinal column stimulation

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  • #12264
    Sweet Caroline
    Participant

    HI first time posting here I found this site yesterday and would like to hear from anyone who has had this procedure done as Im due for surgery on Thursday and im getting quite anxious. The op is being done in the southern General hospital in Glasgow.
    Would aprreciate any feedback at all op is being carried out as I have damaged nerve which gives me pain radiating from my buttock down leg to foot, have been on 30mg mst morphine and 900mg gabapentin twice a day for over two years and I am hoping to be off this kind of meds after surgery.
    Great site seems bery friendly and very informative.

    #12265
    Anonymous
    Inactive

    Hi Caroline you need to talk to Nicky .on here she is lovely and she has a scs .read previous posts .welcome to this site and good luck with you operation {i was considering having a scs myself due to 2 failed back operations and as a result i am in pain 24/7 but i have decided not to proceed as i don’t want any more surgery tony

    #12266
    ross49
    Participant

    Hi Caro,

    Hopefully you will get a good deal of benefit from SCS. The procedure is uncomfortable and, if resembles the procedure I underwent you will probably be awake but slightly sedated while the stimulator is inserted. This sounds worse than it actually is. The surgeon needs to insert the stim right next to the spinal cord, without piercing the dura mater, but it’s not an uncommon operation these days and everything should go well.

    Remember to give the most accurate feedback you can when the stimulator settings are being tuned, and don’t expect to be taken off your drugs immediately. You’ll need to back off both mst and gabapentin slowly.

    So don’t be frightened, and with luck you’ll feel a lot of relief after the op is over and the stimulator has had time to ‘bed in’.

    kind regards

    ross

    #12267
    nicky
    Participant

    hi Caroline,
    welcome to this site. I had my 1st scs implanted for the 1st time in 1998. Since then ive had to have a replacement once a year as i have it on a fairly high setting 24 hours a day and that uses the battery up quickly, At present ive just had my 9th replacement but next time i will be having the rechargable one which should last several years. i have been suffering with chronic low back pain for 20 years and have had 3 failed spinal fusions so although the stimulator takes the edge off the pain i am also on a lot of drugs including high levels of opiates.
    The 1st time you have the scs they will probably give you a trial period they will put you under a light anaesethtic and once they are ready to implant the electrodes on the spinal cord they will wake you up and ask you questions until theyre happy that the electrodes are in the right place (you wont remember anything ) once you can feel the tingling sensation in the right place they will put you back under and finish the procedure.
    If the trial goes according to plan they will implant the actual scs just under the skin, mine is on my right hand side of my waist. When the battery goes its a minor op and can be done under local anaesethtic.
    Im happy to answer any questions you may have so feel free to get in contact also like tony mentioned there is a lot of previous postings on scs.
    I hope you get on ok with it keep us up dated and good luck with it all take care Nicky

    #12268
    Rob
    Participant

    Oh Sweet Caroline How I envy you. I have researched and had to pay for my own diagnosis to get a stimulator and am verging on paying for my own as the NHS agree BUT !!! But what…you tell me! This week I am hoping for some answers as to why the delays are so great to treat patients with an acceptable way forward. I just feel shoved from pillar to post with a system that is designed to play for time. Time is money and our system is so different from Europe. Docs blame paperwork and European Docs wouldnt work in the uk. due to our way of doing things. Good luck and hope all goes well for you and that the result is good. Fear not with the electrode placing…its a moment gone quickly and the rest hopefully follows on. …no doubt you will have had worse proceedures. I wish you well. My original thread is wiped due to its age but if you wish to mail thats fine too. Written off by ortho surgeon fobbed off by pain clinic…researched for self by going to Belgium and have notes from top consultant that the Uk is trying to catch up with and hopefully will soon get there now. There are loads of us on here will wish you well with that green envy …; GIRL !

    #12269
    Amanda
    Participant

    Hi Caroline

    First of all I want to wish you every luck on Thursday with your operation.
    I have a Spinal Stimulator – fitted in Belgium over 15 months ago.
    The initial operation was uncomfortable but very bearable, the relief of actually feeling sensations in the right area was tremendous. I was awake throughout the procedure and cried my eyes out as I got huge pain relief as they turned on the Stimulator – no one had helped with my pain for over five years!
    As for meds…I still take the same amount as pre Stimulator but now they combined with the meds give me a quality of life never experienced before.

    Go for it Girl and take a deep breath and allow yourself a chance for some pain relief and worry about getting off meds later on.

    I will be thinking of you on Thurs

    Amanda

    #12270
    nicky
    Participant

    Oh Rob,
    I am so upset for you, You do not deserve to be treated this way. The amount of broken promises that you have been given is totally unfair you seem to have been on the list for years and years.
    Whats the reason for their delay at the moment you must feel so fed up with it all. Have you attended the pain management programme at the walton pain clinic yet. If you want to let off steam i am here for you as you have been there for me Take care of yourself you will get that stimulator one day lots of love Nicky

    #12271
    Sweet Caroline
    Participant

    Hi everyone and thank you all for taking the time to reply…I will tell my story and hope that you can get some help if you are trying to get scs….I had initially sciatica which got worse and very painful, physio ordered MRI scan and then one week I said it was a little better so he cancelled it….atter months of worsening pain I was started on morphine and GP reordered scan which showed lowest two discs collasped onto nerve….got microdiscectomy op feb ’07 which failed and the nerve left damaged and was basically told that was it take the meds and get on with it…pain clinic tried caudal block and after 5 attempts on same day was not going to work so they went for epidural which had no affect….by fluke at routine pain clinic appointment at Gartnaval Gen in Glasgow my usual doc wasn’t there and stand in from Southern Gen asked me if I had heard of SCS which I hadn’t, she then said she thought I would be perfect candidate and refered me…that was end of April and here I am gong for op on Thursday…its awful that the NHS can do this op so quickly for some lucky people like me I feel bad for the ones who have had to fight and still get no where…I will defo stay in touch this site has gave me so much just by reading others stories I know Im not alone dealing with this…Thank you all soooo much xxx

    #12272
    Rob
    Participant

    Travelling to Walton tomorrow having had my fortnightly pinta blood drawn off today. Appointment is thursday 8.30 am till 2.oopm. See neuro, physio.ot and physch for decision……well maybe haha depending how it goes. It is still a case of PMC first although the stim is approved. One thing is certain and that is that I will be coming back with some explanations and definite info as to what they are doing and why it is taking so long. What they say be remains to be seen. Will let you know at the end of the week

    #12273
    Liz
    Participant

    Hi Sweet Caroline

    I wanted to wish you luck for Thursday & I would be interested to hear your experience as I am waiting for a date for a trial. I have had the funding agreed but the hospital seem to be dragging their heels & I cannot get much sense out of the secretary – I just wish they would get their finger out as the anticipation is awful. I am like you & want to know if it will help with getting my medication down & increasing my activity etc.

    Anyway – as I have said, all the best for Thursday
    Liz

    #12274
    Anonymous
    Inactive

    GOOD LUCK CAROLINE xxxxxxxxxxxxxxxxxxxxxxxxxxx I WILL BR THINKING OF YOU love tony

    #12275
    Sweet Caroline
    Participant

    Thank you all sooo much for the support I’m just glad I found this site last week it has been invaluable to me…..Rob I wish you all the best for this week and hope you get some answers…..my bag is packed for the hospital tomorrow but dont think im gonna get much sleep tonight I’m very nervous but i know I can come on here and find someone to gab to …cheers guys…xxx

    #12276
    Rob
    Participant

    Hope it all went well on thursday Caroline and guess you are playing with settings at this stage. Hope that it is working well. Walton are sending me an appointment for the trial for November and given a positive result implantation is scheduled for Feb. That was great news for me and a strange feeling as my goal is finally achieved. The Pain Management Course that they originally wanted to delay things further with has been waived. The whole appointment lasted 6 hours yesterday but thankfully went the way I wanted. The end of two long years of researching and pushing has an end in sight. Thank you all the people on here who have relentlessly supported me throughout and I will catch up on mailing next week

    #12277
    nicky
    Participant

    hi caroline,
    Ive been thinking about you i hope and pray the op went well and that you will soon be getting some pain relief from the scs. I know all hosptals are different but when i 1st had mine implanted they did not actually programme it for 2 weeks after as they like the inflammation to settle before they programme it. but if you have any questions at all i am more than happy to speak to you so feel free to e mail me.
    Rob all i can say is HURRAH at last some positive news i am so so happy for you. Finally there is a bit of light down the end of that very very long dark tunnel.
    I hope you are one of the lucky ones whose pain will really benefit from the scs cause you really deserve it to after the way youve fought for it. Good luck with it and keep me up dated on how it goes.
    Hi Liz my fingers are really crossed for you too sweetie it seems like rob you and i have been having this conversation for years. Lets hope that we will all soon be comparing notes about our scs. lots of luck with it all Nicky

    #12278
    Rob
    Participant

    Yes and well done Liz…you are about to beat me to it and happy that you can go on my guinea pig list haha It all comes together in the end..we hope. Good luck and keep informed.
    Thanks Nicky and it does seem for ever in all sorts of ways but it has made good friends along the way which can never be taken away !

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